posted
Have any of you heard if there are ever FALSE negatives on the Advanced Lab Spirochete blood culture test?
I was 7 IgM Bb bands positive, 2 Bb bands positive IgG, positive PCR for the Borrelia DNA in my blood, & positive for Anaplasma (Human Granulocytic Ehrlichiosis-HGE)on my IGeneX test in Feb 2011.
I just got back my blood culture now & it says "negative" after only 9 months of treatment.
Are there FALSE negatives on the blood culture?
JenniferMN
Posts: 83 | From Minnesota | Registered: Jan 2011
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poppy
Frequent Contributor (1K+ posts)
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posted
yes
This has been discussed quite a bit here. Try a search maybe for the word culture in the archives. I don't remember now what the reasons are, but it is possible.
On the other hand, wouldn't it be nice if you were cured!
Posts: 2888 | From USA | Registered: Mar 2004
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posted
That is cut and dry test.They culture your blood, look at the culture through a microscope to see if there are any spirochetes in it.
If they find any, they send you a photo of them.If they don't find any,then they can not send you a photo showing that you have spirochetes in your blood and you are negative.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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map1131
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If the symptoms are still there then.....the spirochetes are not traveling by blood actively at that time. They are deep into muscle, organs, bone, brain living it up and thriving.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
So how do you know when the spirochetes are traveling in the blood at any certain time?For $600 a pop,I would think that they would tell you that.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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map1131
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Some people for $600 will tell you anything.
Spiros are not always seen in the blood. Now with co-infections that can live in blood cells like babesia, yes it would be likely to see them hanging out in blood cells. But they too go deep into the organs.
Also if you're taking abx or any other supps that threatens the spirochete, they know how to drive deeper and get away from danger.
If this was a simple blood disease it would be 30 days of abx and we're done. That doesn't seem to be the way it is for a high precentage of us.
Pam
Also today's picture of the blood could look different tomorrow. Spirochete here today, gone tomorrow and vise versa. That's why there is so many false negatives on WB tests, so blood smears are not consistant absolutes either.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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quote: PRESS RELEASE Sharon Hill, PA, September 5, 2011 BORRELIA CULTURE NOW AVAILABLE TO EVALUATE LYME DISEASE PATIENTS Research breakthrough promises a new Gold Standard in Lyme Disease testing
...
Bb culture nuts and bolts � Sensitivity exceeds 80% if the patient is symptomatic at the time of blood draw and not on antibiotics for at least four weeks � All negative controls have remained negative so far � As with all blood cultures, may need several sets to be sure � Any positive test is significant, even if it is the only positive out of a set of three
We have found that the success of culturing Borrelia can be increased by following these simple recommendations: � The patient should not have been exposed to any antibiotics, even those not known to affect this organism, for a minimum of four weeks prior to the blood sample being drawn. � Borrelia are more likely to be recovered from patients who are symptomatic at the time of blood sampling. � A higher yield may be seen if the blood is drawn in the early afternoon, when most infected patients feel especially ill.
Posts: 426 | From Berkeley, CA | Registered: Feb 2009
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map1131
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"You may need several tests to be sure". There you go. If you are lucky enough that the blood drawn has a little spirochete swimming around at that exact time, in that blood sample.
All I'm saying is don't spend good money on testing. If you're ill and are having symptoms spend your money on abx, supps, herb, rife, vits, etc.
Jennifer, that particular blood sample had zero spirochetes. Do you have symptoms? If the answer is yes, I'm ill, then maybe you will need to do several more tests? Use your money for tx.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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In it they state:"So far,of the experimental examples,nearly all of the cdc+ clear cut Lyme cases have been positive,AND THERE HAVE NOT BEEN ANY INSTANCES OF FALSE POSITIVES OR CONTAMINATION"
Now this is a Burrascono endorsed test in which he was a consultant.
In it they state:"So far,of the experimental examples,nearly all of the cdc+ clear cut Lyme cases have been positive,AND THERE HAVE NOT BEEN ANY INSTANCES OF FALSE POSITIVES OR CONTAMINATION"
Now this is a Burrascono endorsed test in which he was a consultant.
mapp, are you doubhting Burrascano's judgement about this test?
It says there have been no incidinces of false POSITIVES but it doesnt say there hasnt been FALSE NEGATIVES.
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Even still,why all the doubht about the test?
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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map1131
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I'm doubting false negatives. Don't believe in false positives. This all started with Jennifer having a negative blood smear. 9 mths tx, blood smear says negative. What matters is her sx.
No gaurantees on blood testing for lyme & co. I'm just saying just because the blood says negative.....doesn't mean the spiro or the anti-bodies arne't present else where in the body causing havoc.
You must go by clinical sx with TBI, not all the blood/smear testing.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Hi Jennifer. How long did they culture your blood for? Was it for 1 week? Do they culture for longer in some cases?
I haven't read the info about the ALS tests for a long time, because it's not available in the UK and it's very frustrating not to be able to have the test. But I'm sure I read somewhere that some patients' blood samples might need a longer culture time. Did you decide to have a PCR anyway? Did they advise you of what your next options would be?
I wish the ALS people would set up a lab in Europe. There are so many of us here wanting to have their tests.
Advanced Labs checks your blood culture after 1 week to see if they have been able to grow any Borrelia bacteria. If they have, they take a picture of the spirochetes & send it to you along w/ your "positive" results. If there is nothing growing after 1 week, they put it back & then do not re-check it for another 10 weeks. So, after a total of trying to grow the bacteria for 11 weeks, if they still can't, they send you the results as "negative".
So, I had my blood drawn on July 23, but did not get back my results until Oct 5. As I said, they were "negative".
Positive for the DNA of Borrelia in my blood in 2 independent PCR tests.
Positive for Anaplasma.
Negative for both Babesia & Bartonella.
So, the end result is Pam (map1131) is correct that if you've had it for a long time (I've had it for at least 13 years without knowing) it may not appear in your blood, but may be in your muscles, brain, etc. OR, Maybe I just have adrenal fatigue & the Lyme damaged my pituitary, thyroid, & hypothalmus (the sleep center of the brain). Maybe if I can fix that, I will finally be able to get quality sleep again.
My BIG problem is sleep. I get non-restorative sleep. Very, very shallow & don't get anything out of it. My hips hurt. I have terrible exercise resilience, meaning after I go out for a vigorous hike or jog, or walk on the treadmill, I sleep even worse for a week afterwards. I used to be a x-country runner & hiker (that's how I got Lyme).
After I got back my "negative" Advanced Labs results, I went off abx again. I'm going to go to an Endocrinologist & get my adrenals, hormones, thyroid, & pituitary all checked.
Back in May, I had a CD57 test that showed mine was only 42. So, I don't see how I can be cured of chronic Lyme when my CD57 was only 42. Why else would my immune cells be suppressed?!
JenniferMN
Posts: 83 | From Minnesota | Registered: Jan 2011
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Keebler
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- As the blood sample sent was just 5 months after glaring positive WB results, you are still ill, it's most likely that the culture test sample did not contain borrelia - or the test could not culture it.
Remember, spirochetes don't really like to hang out in the blood stream, anyway, so the test is not a perfect one.
There is no test that can prove absence - or cure - of borrelia. None.
YOU are your best tester. And your LLMD (or another one) the best to guide treatment, what all to consider along with lyme and nutrients, etc.
I think it's very dangerous, potentially life-threateningly dangerous to stop lyme treatment based on this one culture test result.
I hope you have an excellent and experienced LLMD to guide you.
You say your next stop is to see an Endocrinologist. If they are not LL, that can be a huge waist of time and could adversely affect you. Be sure to ask your LLMD for a referral to a LL endocrinologist.
Of course, not everything is always lyme, however, for anyone with lyme, ONLY a good LL specialist can give them correct attention.
Lyme changes so much about the body and if the specialist (in whatever field) is not LL, most likely they will not know enough for proper assessment - or for the best Rx as many Rx are not okay for those with lyme.
Especially with adrenal function, lyme has such drastic effects but those are unknown to regular endocrinologists. Be sure they are LL. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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It was a YEAR & 5 months later (I had the IGeneX tests in Feb 2011 & the Advanced Lab culture in July 2012).
But, I totally agree w/ you.
I've been to 3 LLMD's in Minnesota & none of them really know what they're doing. It was my LLMD who told me to stop my oral abx 2 weeks ago after I got back my Advanced Lab "negative".
Here's his plan: 1. Stop abx.
2. Explore approaches to help w/ the restoration of normal hypothalamic-pituitary-adrenal axis issues. Testing may help, but we can help as well empirically. We should note that she did have a urinary & salivary neuroadrenal study by Neurosciences done 10 months ago that showed significant adrenal fatigue.
3. Add tactical amts of bio identical hormones following some serum testing on or near day 20 of her cycle.
4. Reapply targeted amino acid therapy w/ the addition eventually of tactical medications if absolutely necessary to restore healthy sleep hygiene.
My LLMD warned me not to go to an Endo because they wouldn't be Lyme literate (but I'm paying him $375 per visit & he doesn't take insurance & I think he doesn't want to lose me as a patient). But, I thought maybe the Endocrinologist tests would still show if I had damage, regardless of whether he understands Lyme... Also, my friend from the MN Lyme support group is SUPER SICK, much sicker than I, and she saw our LLMD for 2 years & has not gotten any better. Plus, he refused during all that time, to put her on IV, so she wasted 2 years on him. So, she is now flying out to see Dr. J in Washington DC. I would do that, too, but I can't afford that. The LLMD's in Minnesota are NOT good. Everyone who has money is now flying out East, after failing w/ LLMDs here.
Oh, and lastly, I ran on my treadmill the morning I had my blood drawn for Advanced Lab culture, so I'm also suspicious the increased oxygen in my blood drove the spirochetes into my tissues & thus they did not show up on test.
Anyway, I agree w/ what you're saying that there seems to be no way to PROVE you are now negative, except to feel much better. Except the CD57 test... that should prove you are better if you ever get up over 100, right?
JenniferMN
Posts: 83 | From Minnesota | Registered: Jan 2011
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Have to agree that your LLMD does not sound up to par. A really good LLMD would have continued your antibiotics plus done all of the other things on your list.
Years ago while he was undiagnosed hubby worked with several ACAM docs to try to balance his hormones and neurotransmitters. It never worked. He always did better on nutritional supplements and herbs than meds for those issues, but trying to fix those issues without addressing the underlying tickborne infections was impossible. He felt better and was more functional when he was on antibiotics/antimalarials, herbs and nutritional supplements all at the same time.
In the list of supplements I do not see any mention of B6 or p5p or Japanese knotweed (resveratrol). Those are the things that really helped hubby - at one time his sleep study showed zero stage 4 sleep. He eventually was able to stop the use of his CPAP after treating his bartonella.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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map1131
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Bea, I'm trying to PM you and you're on full.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, the CD57 is NOT a good test to "prove" anything about lyme, either. It's just one piece of information but will not tell you anything specific about lyme.
You say that your friend wasted two years in treatment and did not get better . . . remember that may don't see marked improvement until around the 3 year mark.
Now, that does not mean everyone is always with the best doctor but even the very best doctor, the best plan, the best access cannot guarantee results in any specific time line.
Lyme is very complex and it's never just lyme. Ever.
Please do heed your LLMDs advice regarding the endocrinologist.
Still, if you do go, be sure to avoid ANY CHALLENGE TESTING that involves steroids. This is the real risk with non-LL endocrinologists. A huge risk. Because they just don't know the damage that lyme does to the HPA axis. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
Cortef ? Adrenal links -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I just happened to see that you are taking:
D L-Phenylalanine
I am shocked and wonder why. No one with adrenal exhaustion should be taking that. That can be far too stimulating.
Is this something you added or your LLMD suggests?
What is your dose? Very tiny, I hope - and in BALANCE with other calming agents? Is the combination working okay for you? If you have any nervous system irritability, anxiety or seizures, you may want to back down and then off of that, gradually. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I guess I was hoping so much that the ALS test would be infallible, but it still sounds worth having - I would have it done if it were possible in the UK.
As Keebler says your blood might not have been carrying the Borrelia even though you are still infected - and another thing I just realised is that what if there are strains of borrelia that won't grow in the medium they use? I don't think that's the case though, because you have such positive results previously, especially the PCR, so it can't be a non-typical unusual strain of Lyme.
I think your own explanation is really valid too - damage to your hormone and neuro-transmitter control mechanisms.
Here in the UK there are probably only about 4 doctors treating Lyme, and none on the national health service - so everything your doc is doing is marvelous compared with what 99.9% of us ever have access to. Hope you see lots of improvement.
One of the European doctors I read about was doing 6-week sessions of 3 antibiotics at once, 5 times a year. So there were 4 week rests from abx inbetween.
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